Josh Blom, the father of DIPG Warrior Aldon, details his experience of being a father of a child with DIPG:
Aldon was an incredibly smart and outgoing child. He loved doing puzzles and anything that had to do with numbers and the alphabet, which he knew up to 10 and all of the letters. He really enjoyed watching sesame street and anything with a lot of singing, but his favorite was to be outside playing especially basketball.
We started to notice a few symptoms such as tremors, slurred speech, and loss of balance. After multiple visits to his PCP attempting to figure out what was going on, and the addition of facial drooping, she sent us to a UPMC Children’s hospital of Pittsburgh satellite office. This neurologist did a thorough examination and concluded that there was a possibility of a tumor and sent us to Children’s main campus.
While at Children’s in Pittsburgh we were told that it had the signs of a tumor and they had to do a MRI, which then discovered that it was DIPG. When I first heard this diagnosis I figured there had to be something they could do to which I was told to his knowledge there was no treatment. When I heard this I was heartbroken but determined that there was someway to help and I couldn’t give up I had to protect him the best I could. After meeting with his Neuro-Oncologist we learned that radiation was the standard treatment but to make memories. I didn’t really have time to process through the whole process because I had to focus on asking the doctors questions, immersing myself in learning, and caring for Aldon.
Post diagnosis my role changed from being a regular parent to having to take a lot more on my plate. His life consisted of doctors appointments and radiation treatments, not normal activities for a 2 year old, so I had to adapt with him. I tried my best to keep his life as normal as possible but constantly worried and was on guard. I became the primary information seeker along with giving information to the doctor.
All of Aldon’s life I was a very hands on father that always worried about his well-being and put him ahead of myself. I always wanted to spend as much time with him as I could and make sure that he was the happiest little boy in the world. After diagnosis I carried him when he couldn’t walk and if he wanted to try to walk I assisted and never left his side. When he was on hospice and couldn’t drink on his own I helped him get drinks with a syringe. I did anything I could for him before and after diagnosis.
Memories are so bittersweet after he passed but all of them have to be cherished because that’s all I have now. It’s hard to pick any specific memory as my fondest because I have learned through this process that they all have to be held with high regard because I was with him. I love thinking about him lighting up when we were at a parade, listening to him sing songs and dance around, hearing him say swish playing basketball, or getting to take him to see animals and him running to feed the giraffe or when he saw Dory. But what runs over and over in my head is his little voice calling me daddy, that’s the memory that hits the hardest. The best memory is being his dad.